The pain below

Raising awareness for the very real vulvodynia

Recently, I stopped into a coffee shop on Quinpool Road for a latte. I asked to speak to the owner to request permission to post a recruitment flyer for two new research studies. The top of the flyer says "Do you (or your partner) experience pain during sex?"

The owner responded that "those kinds of people" don't come into her coffee shop. She said that people with these problems would probably be found in medical clinics or hospitals, so I should post my flyers there. My first reaction was that perhaps she is like many women who simply aren't aware of this common and distressing pain condition. So I started to explain what this research is about.

Approximately eight to 16 percent of women suffer from a recurrent, vulvo-vaginal pain condition called vulvodynia. It remains unclear what the cause of this condition is, and in most cases there aren't any physical signs of illness (in other words, the gynaecological examination looks normal). But the pain is very real. It causes severe pain during sexual intercourse, typically described as burning or cutting. The pain is also triggered in non-sexual situations, such as using a tampon or riding a bicycle. In the new edition of The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), it is categorized under female sexual dysfunction and called "genito-pelvic/pain penetration disorder." Studies have shown that affected women experience more anxiety and depression compared to women without this pain, as well as a reduced overall quality of life.

Vulvodynia negatively affects all aspects of women's sexuality, including their sexual desire, arousal, orgasmic ability and frequency of intercourse. It also impacts women's intimate relationships, and their relationships can in turn affect women's pain experience. My research focuses on how sexual partners respond to the woman during painful intercourse.

We learned that being overly sympathetic can fuel avoidance of all kinds of sexual activity (not just painful intercourse) and is associated with more pain and sexual impairment. In contrast, encouraging more approach-oriented coping---expressing pleasure during sex and focusing on non-painful activities, for example---leads to less pain and a better sexual experience. Treatment options are available, but rarely cure the pain outright. Still, researchers and clinicians have made great progress in understanding this condition and potentially effective treatments.

I had only hit on one or two of these points when the coffee shop owner interrupted me to say she did not think the flyer was appropriate. I asked one more clarifying question: "Is it the content of my research or do you not allow any research flyers to be posted in your shop?" She replied like a broken record: "I just don't think it is appropriate."

I left feeling frustrated and sad. The attitude that this female shop owner displayed is exactly the reason why so many women with vulvodynia suffer in silence. Her attitude toward this population and the research associated with it fuels stigma toward female sexual disorders. It is part of the reason why women see on average five different physicians before receiving an accurate diagnosis. Many of the women I see share stories of being told the pain is "all in your head," and they believe it.

Together with my collaborators at the Université of Montréal and the IWK Health Centre, we recently received over half a million dollars from the Canadian Institutes of Health Research to pursue two clinical research studies focused on women with vulvodynia and their romantic partners. Through their funding support, the academic community and federal government have acknowledged the importance of improving our understanding of, and treatment options for, this prevalent and distressing pain condition.

But first women and their partners need to know that they are not alone, that their pain condition is real and has a medical diagnosis, and that help is available. I would like to spread the word as widely as possible to reach "these kinds of people." Starting with my local coffee shop. a

Dr. Natalie Rosen is a clinical psychologist and an assistant professor in the departments of psychology & neuroscience and obstetrics and gynaecology at Dalhousie University and the IWK Health Centre. She has worked in sex and couple therapy and studied vulvodynia for over 8 years. To participate in the research, contact or 494-4223.

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